Appreciation of courses on communication skills for doctors : a pilot study in the field of hemophilia

Despite a large body of literature discussing the implications of the physician as a person in the process of caring for people with a serious chronic illness1, this research area still seems to be unexplored in the context of hemophilia. Aim The aim of this study was to explore hematologists’ internal representation of a difficult encounter with a person with hemophilia. Method Sample and data collection: At the beginning of a training program on doctor-patient care in the field of hemophilia, 48 hematologists were asked to write a story of an encounter in which they perceived a relational difficulty with a person with hemophilia. All written material was anonymous; the physicians’ socio-demographic data were collected. Participants gave their consent to the use of the material for research purposes. The study was approved by the Ethical Committee of San Paolo Hospital, Milan, Italy. Data analysis: The narratives were studied using Interpretative Phenomenological Analysis (IPA)2. Through interpretation of individual narratives, IPA allows the researcher to grasp the essence of how people experience and understand the world. IPA is an iterative inductive process that starts from careful reading of the texts, aimed at gaining a holistic understanding of all collected narratives. The data storage was supported by N-Vivo8. Results 48 narratives were collected and analyzed. Three main issues were identified, each with sub-issues: 1. Inside the relationship This issue includes the perspectives of physicians who live inside the relationship, and have to cope with a series of challenges involving the person with hemophilia and their family. a) To tell or not to tell: Breaking bad news is perceived by the physician as an emotional difficulty more than a clinical one, which often leaves them without words and with only one instrument to use: emotional closeness. “A 14 year old boy, hemophilia B, HIV+…it was really terrible to tell him about this third problem (lymphoma)…the parents would have wanted not to tell him, but the guy was much too bright… at the end I lasted out but he didn’t…” b) To convince them that it is normal: The contradiction that the physician experiences daily when, on the one hand, they invite people with hemophilia to live a normal life, but on the other hand need to make sure that they have understood the seriousness of their condition, in a world ever less disposed to accept imperfections. “I explained to them that their son would be hemophilic throughout his life, and that they should consider it as a condition and not as a disease…and that they would have to let him be “free” growing up…” c) The guilt: Non-acceptance of the “imperfection”, with an intolerable awareness of the genetic burden of the disease, seems to rebound on the physician as an emotional shadow and enter the care relationship, hindering it. “The incredulity, the desperation, the sense of guilt of that mother… I will never forget…” d) The ghost of maltreatment: The physician feels a responsibility to vouch for the fondness of parents toward a young child affected by a condition – or, contrariwise, to decide to separate a child from their family. “A 10-month old child who presented with widespread hematomas all over the head and one very pronounced on the buttock…the parents had been reported by the social assistants, accused of child maltreatment…I was struck by the loving care of these parents towards the baby…after a few days it was clear that the child was affected by serious hemophilia A…” 2. On the borderline of the relationship These narratives presented a series of issues that seem not to belong strictly to the doctor-patient-family relationship, but rather to be on the borderline of the relationship. a) Professional values: Physicians seem to have difficulty living with the ethical and deontological implications of the care of people with hemophilia beyond their clinical competence. “At the time I was involved because the brother, 38 years old, hemophilic and followed elsewhere, had to marry and hadn’t informed the future wife” b) The “know it all” doctor: The physician finds themselves assuming several roles that exceed their clinical competence: we found doctors who take on not only the person with hemophilia, but also their family. Trying to deal with their problems can lead to feeling unable to take on the relationship, just because it is huge. “…little by little we became ‘friends’, in confidence, the mother told me a series of dramatic family issues: a drunken father who beats her, a drug-abusing brother, etc.…I tried to speak often with her about their problems besides those of the hemophilic son, with delicacy and interest…” 3. Around the relationship: The life The last semantic area deals with an existential issue, life itself. a) Existential questions: The life challenges of a human being seem to coalesce around the relationship: the person with hemophilia’s questions engage the physician, who feels humanly involved. “A 15-year old boy, serious hemophilia A, HIV+ and HCV+: ‘I know what I have and the future that awaits me; help me to live the best I can with what I have’ … flattered and scared, I accepted the challenge on one condition: we would grow up together” b) The ups and downs of life that the doctor watches with a magnifying glass: The issue of being exposed, due to the doctor’s work itself, to life, with the burden and honor of being able to observe it often, in its many facets and closely, as with a magnifying glass. “…accompanying him to the end of life after three chemotherapy cycles has been one of the experiences that marked my life of being mother” Conclusion The study seems to bear witness to the profound involvement of physicians in relations with the people in their care. These relationships seem to be perceived at a professional level, but also strongly at a more personal level. The experience of being so deeply involved should be considered in the training program of physicians dealing with hemophilia, in order to favor a satisfactory management of professional wellbeing and of the boundaries of doctor-patient relations.